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Day 29: The Killing Frenzy is Done- Time to Celebrate Being CLL Free

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Killing Frenzy from our CAR-T comic book

I received my CAR-T cells on March 22, a Thursday, so Thursdays, every 7 days, are my days of reckoning when I get tested for just about everything imaginable. And, yesterday, April 19, was the 4th Thursday since my infusion so I got my CT scans and bone marrow biopsy for my restaging my CLL.

As you know the killing frenzy unleashed by the expanding numbers of CAR-T cells released massive levels of cytokines (inflammatory chemicals) that made me very sick and I am still anemic and achy.

But the killing frenzy is over….. because there is no cancer left to seek and destroy. No targets for the CAR-Ts to strangle.

My news is near perfect.

The CT scan done yesterday showed complete resolution of all the lymphadenopathy (enlarged lymph nodes) in my neck, chest and axillae, and “near complete” resolution in the abdomen and pelvis.

” Near complete” is not a worry. It is in fact, amazingly wonderful news. My largest indexed node was found in the left groin and measured 1.6 x 1.4 cm. It had been 3.8 x 3.1 cm before treatment.

Most CLL experts would say anything under 2 cm is normal. All say 1.5 cm is fine. My millimeter bigger node could be from scarring or from some persistent T cell activity. Some nodes never go back to normal. They stay enlarged and when biopsied, show scarring snd inflammation, but no cancer. I am convinced that my chronic lymphocytic leukemia has been chased out of my entire lymphatic system. A month ago I had “multiple enlarged nodes” from my CLL everywhere. Not now. And that is the most difficult area to rid the body of CLL with any cellular therapy as the cells need to penetrate to the cancer deep in the enlarged nodes.

But wait there is more!

My bone marrow biopsy was MRD (minimal residual disease) negative. That means no CLL found at a depth of 1 in 10,000 cells. They were 40% of the marrow a month ago. I am still waiting for the full biopsy report and they will do even deeper sequencing to look for CLL but I am confident that too will be negative. The drop in my hemoglobin was because my marrow was under siege, inflamed and in no mood to made red cells due to the onslaught of the serial killing CAR-T cells. I am sure they left no survivors.

When I got the call, the endorphin release from the life changing positive news took away all the pain from my knees for a few hours. I think I should have my provider call me several times a day to remind me of the joy of being cancer free.

And there is still more. On day 21 (another multiple of 7) I had a persistent healthy population of engineered T-cells hanging around in my blood, looking to kill any straggling CD19+ CLL cells. The CAR-T cells had survived the two heavy slugs of steroids (dexamethasone) that brought me back to life when I was far gone in a world of pain, fever, confusion, and immobility.

Steroids kill T-cells, but in my case, not nearly all on them.

The one piece of bad news is that I developed a small asymptomatic blood clot in my lung (pulmonary embolism or PE), likely from not moving my legs and begin in such a hyper-coagulable when in the middle of my cytokine storm. Doppler studies today showed no residual thrombus (blood clot) in either leg or in my right arm where I have a PICC line (an indwelling venous catheter used for all my blood draws and infusions) that can lead to blood clots. So the risk of recurrence and complications is low.

I give myself two shots a day of low molecular weight heparin (Lovenox) to prevent the PE from becoming a real problem. The pain and bruising is minor, but there is concern of increased bleeding risk with these of any blood thinner with ibrutinib, but the combination with Lovenox is thought to pretty safe.

I wil take a blood clot and sore knees over cancer any day.

Time to celebrate.

Patty and I out to Celebrate Our Great News

38 Responses

  1. Well, you can try walking on water any time you feel like it.
    Superb result, congratulations.
    You need some cold beers, that fixes that PE stuff up in a jiffy.
    Imagine the possibilities when CAR T targets ROR 1.

    1. I will leave the walking on waters to others, but CAR-Ts targeting ROR1 are already up and running at SCCA/HUTCH though I know of no data yet. It is very important to get the right target on ROR1. Dr. Kipps is working hard on it. His ROR1 CAR-T is probable a few years away. Agree that it is an important part of the future.

  2. Congradulations!
    I recived my CLL diagnosis on the day you started treatment. I have been following your progress with baited breath. Thaks for being a pioneer.

  3. Your facebook post said you are giddy. Brian, I am giddy myself at this news. It almost seems surreal to see the words “no CLL found”. I could not be happier for you. Thank you for being the warrior, the pioneer, the advocate for us all. You so deserve this.

  4. Wonderful news!! Thank you for the info and your courage. I hope to follow your path one day and hopefully not out of necessity.

  5. Thank you for this amazing story of your treatment. You have given readers the best possible thing: HOPE. It is a precious gift. Thank you.

  6. amazing news, congrats! thanks for being a pioneer in this process, with such strength and grace. we are now in southern california visiting our family. wishing you a warm welcome home, sj

  7. Truly awesome what you went through and continue to go through.
    I will be asking my local heme onc and Dr. Byrd to read your blog before I see them next in June and September respectively.
    Amazing risk / reward


  8. I’m SO happy and thankful for your fantastic news! Praise God for this amazing therapy! Enjoy your new lease on life, Brian! Thank you for encouraging all of us!

  9. Truly wonderful news! Thanks for being the subject of this pioneering treatment !! You give the rest of us hope 🙏

  10. I am so happy to hear this! I read your blog for my brother with CLL and had primary liver cancer myself 20 years ago.

  11. Rosa and John
    Congratulations Brian and Patty. You have provided us with very important information about CLL, you are tireless advocates and now a CAR T cells pioneer. We are all celebrating with you. Great news! My husband John is going thru radiation starting March 22 at Stanford after squamous cell carcinoma of the tongue after prednisone, cytoxan treatment.

    1. Best wishes to John. I have seen many patients do well with similar cancers, though it is a tough course.

  12. Oh Brian, how happy we all are. What you weathered was awful. My Tom and I have all the admiration in the world for what you have brought to our club no one wants to join. Be strong all of us. And thank you Patty for keeping us updated.

  13. Congratulations Dr, Brian , my name is Sam , close friend to Mike Sater .I was following your case on CLL Society .
    So happy for you and your family , it is a Bless from God .

  14. F A N T A S T I S T I C ! ! ! ! My wife had aggressive follicular lymphoma and progressed rapidly after R-CHOP, BR, Ibrutinib, and Idelalisib/rituximab. She is in an NIH CAR-T clinical trial, received a CAR-T infusion on March 2, 2016. and has been in complete remission for 26 months. Life is great.

  15. Such amazing, wonderful and fantastic news what an incredible journey, so thrilled for you to be cancer free at last! May it be a forever thing xx

  16. Congratulations Dr. Koffman – how wonderful it is to be on the other side! Great picture of you and Patty. So happy for you and your family!

  17. Little Darling(s)
    The Smiles Returning TO the Faces.
    Little Darling
    It Seems Like Years Since its Been Here
    Here Comes the Sun
    Here Comes the Sun
    & I Say It’s
    All Right…
    Sounds like there has been an answer Brian, Patty and family. Blessings well deserved! Elated for you!

  18. So glad you are doing well !! Can you please share a link on to your trial for CAR-T? There appear to be some assorted flavors of CAR-T treatment right now. I have friend who is waiting to join a Kymriah trial at the Sarah Cannon Cancer Center in Nashville. He has MM.

    Malama pono .. stay strong

  19. To have dinner with your wife in a nice restaurant….to feel normal….to celebrate with family and dear friends…after your journey, you deserve this. Congrats to you and to your wonderful wife and daughter for sharing this victory! We all know how important our team is….Hope for the future is what you have brought us! Thank you for being the “explorer” in this unchartered path, so soon the pioneers and the settlers can come after you, more safely and with more knowledge. God bless!

  20. So amazing, Brian!! We’ll be sharing this amazing news with the San Francisco support group. Sending love to you both!

  21. Brian, I have been following your story anxiously waiting for this fabulous news!! Wishing you strength in your recovery CLL free!
    Stacy from your OC group

  22. Love the photo. I can see your health and feel your joy. What an exciting time we live in. When we met in January I came away worried for you. Now I look forward to seeing you again someday with you thriving.

  23. I was patient number 1 in the Car T cell clinical trial at UCLA I n March 2016. I would love to meet you some day. I’m sure we would have a lot to talk about! I had been sent home to die in Dec 2015. Thus the miracle Car T cells still live within me today
    and I’m still here!! No matter what my personal results were, I’m proud to have participitated in such monumental research. Millions of people will now survive this dreaded disease. All the best to you and your family.

    1. Denise,
      So glad you are doing so well. Gives me hope. You are a courageous pioneer. I would love if you write about your experience for our newsletter. It could be so helpful to others. Please email me at [email protected] and we can discuss it.
      Stay strong

  24. Congratulations! Thank you so much for sharing your journey.
    I’ve just found this site and the story of your success is very comforting.

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